Thursday, April 17, 2014

Blessed by Looking good while feeling bad..

What a week this has been; I didn't feel all that great (but certainly not all that bad either) when I got discharged last week and I was able to finally catch up on sleep by Fri and Sat. Over the wknd though I really started to feel pretty bad and though I don't honestly know this is what it was the discomfort started it felt like along the TPL Shunt line increasing throughout Sat., worse when I would lay down (keeping in mind I don't really lay flat) and by Sun though I cont'd on with the things I do the discomfort just wouldn't go away and headaches where seeming to increase. VERY frustrating! Non-the-less you mostly have to just keep on keeping on b/c what else can you do? =/
Non-the-less Monday I went to infusion but was only to happy to be home and just didn't go to Ladies Aid, (which kind of stinks b/c I liked it when I went last month =/) Tues I cancelled dinner plans with friends as I felt even more awful and other than taking a shower pretty much did nothing all day. Super crappy!!! I don't know if I have felt as depressed as I had most of this week in a long, long time, if ever.. =/ I genuinely try to find the positive in most things but even this week, even with Boston coming up tomorrow I just really struggled with how bad I was feeling a vast majority of the time and not feeling really depressed.
The title of this blog is pretty much self explanatory, I often hear "You look really good" (which isn't a bad compliment when you feel bad, I just sometimes when you feel bad you do wish people knew how bad you felt I guess although I also don't want sympathy).
I've often been told I do "looking bad really well" which I guess isn't a bad compliment to hear? Sometimes I just wish it was easier to get answers, for instance I do get tired of the shunt issues and am a bit skeptical that our trying to adjust the shunts is going to help but I guess I hope it will be that simple.
Sometimes I wish there was easier ways like when we used to just tap the shunt (to see how flow was) or if MRIs worked (they don't really in most of us MPS pts) and often it is intermittent flow or obstruction which isn't visible on imaging. In other words I am just frustrated by these headaches and symptoms that just never seem to stop; I mean we do get the shunts working great for awhile and then it's like back to square one for what seems like no reason. To boot I think the MPS storage doesn't help as that isn't visible and I think partial revisions aren't as good as the full revisions as I rarely ever feel as good as when the entire shunt is just replaced. In any case it doesn't matter (it does but it doesn't I guess) as I can't control what decisions are made in that regard, really. =/ I just want the shunts to work fully!!!

I had a f/up Appt with Dr.Bragg today, she has known I was going to Boston for some time and really was trying to make it so I would feel better which I truly appreciate of her. Anyways so today we where trying to decide what if anything to do w either shunt given how bad this week has been (Weds was a little improved, at least I was able to get to PT and I made it over to my parents later on, it really was the nights and mornings by Weds that where so bad-during the day I didn't feel supreme but I also didn't feel as terrible as the wknd/earlier in the wk.)
In any case although I would have liked to adjust either shunt (I think one or both needs to drain more and I do think something is going on w the TPL Shunt as I've NEVER felt this kind of discomfort before, just never and it is disconcerting how uncomfortable it feels. In any case even though I wish in a way we could have changed the setting on either shunt and known it would be ok I also think Dr.Bragg and I made the right decision by not changing anything for now and i'll see her next week when I get back.
We tentatively made an appt for Thurs but she said if I needed to just call when I got back and she would meet me in clinic on Tues (a non-clinic day for her) and we could make a decision on what to do w the shunts then as far as adjustments. For those of you reading if you believe in prayer just pray flights are tolerable tomorrow and this wknd is good; I am both looking fwd to going to Boston and admittedly a little nervous. I also am sad about missing regular Easter goings-on here at home and not seeing my nephew and niece. I wish oh how I wish the Marathon had been on a non-Easter weekend this yr. =/

I'll update sometime next week, for those of you on fb I'm sure i'll have updates or pics on there throughout the wknd.
Thanks for stopping by,

Erica

Thursday, April 10, 2014

Home sweet Home (released post surgery 3/28)

I was released yesterday; we dialed down the TPL Shunt to 40 (it had been at 50) so just a small change but one I felt we needed to try and Dr.Bragg was ok with. Per Dr.Bragg one of the Neurosurg. Residents and her NP took out the stitches which where both dissolvable and the one head incision (the one that kept opening up) removable. Total there where 5 incisions.
Last night was not the best (threw up a couple times a couple hours after being home) but then once un-packed I pretty well just went to bed.

I had to be up fairly early this morning to be to a Pain Mngmt f/up Appt in Milw that had been moved to this morning from mid-afternoon today. Needless to say I like that provider but her office is seriously a mess and I am simply amazed the Nurses and Staff at the clinic she practices at (not her actual office) don't lose sleep/get gray hair over her Secretary.
Not only was my Appt change not on their schedule (they still fit it in, I just had to wait 2 hrs for Dr.B to get there, NOT Awesome!) AND I overhead 2 other patients/families who had the same issue, they had scheduled appts but the Secretary 1. never wrote the appt down (seriously!?) And yet I believe it as this has happened to me multiple times. The other patient was taken off the schedule but not notified.
I am not sure where those patients come from but I drive an hour all appts including this one so needless it is frustrating as h*ll! She is a good dr but soooo in denial about how her office is run!

I follow up with Dr.Bragg next Thurs so until then probably won't update unless something changes.
Other little things in the next week are I am teaching Sun School on Sunday (I knew I could take a break but I really like our girls and we have off for Easter and group Teach the following Sun.). Monday is ERT + re-check INR (same hospital) and tomorrow (Fri) I have PT starting again. Then Tues next week dinner w 2 friends.

I am realllly, really praying I start to feel some better,
If you believe in it say a prayer (or 2 or 3)
I leave for Boston next Fri (Good Fri) so am sincerely hoping I feel more human or atleast less worn out/less headache issue by then!

Erica